Are you Mom enough?

That is the question screaming from the latest Time magazine and causing a furore in the international parenting world as it raises - yet again - the breastfeeding bogeyman and essentially who decides who is a 'good' parent.

The breastfeeding fraternity (or should that be sorority?) are upset, the formula feeders see it as yet another bashfest and even the tube-feeders see it as as a 'you think that's extreme? Try what we have to do!' gauntlet to throw down.

But to my tired and sleep-deprived wandering mind it ambles into all sorts of territory.
I'm not even going to try to get into the this parenting school says this, that one says that and if you don't subscribe to my one then you are automatically a bad mother kind of thing.

I just think about all the received wisdom about parenting - everyone has an opinion even the single person on the bus - and everyone seems entitled to give you the benefit of that opinion once you are pregnant or a parent.
Everyone says parenting is not for the faint hearted, people talk about the preemie roller coaster etc and so many parents bemoan their child's tantrums, early morning starts or fussy eating.
There was a discussion recently on a group I'm part of where a mother said she was really over hearing about these everyday woes of parenting but felt awful just feeling that and certainly couldn't say that to any of her friends.
John Key, our Prime Minister in New Zealand, recently said during a school visit that if one of the kids wanted his job they could have it. He commented on his long hours, of often not getting to bed until midnight and up again a bit before 6am and the work load.
Here in New Zealand there has also been talk of needing to sort out safety standards for adventure tourism.

I've said before that the kind of parenting P and I are called on it do is more like extreme parenting, maybe adventure parenting where the roller coaster could lose a wheel any time.
I'm also awake for nearly as many hours as John Key - not running a country, just simply doing what I have to do to keep my child thriving. The rewards are possibly larger than those financial rewards for running a country - but the grind is none the less unremitting.

Parenting is hard yakka - no question.
Those days when one kid after another throws up, those nights when you just get one kid settled and another needs your attention and all you want is to get to bed, those days when you run out of coffee and everything you touch seems to turn to custard - as parents we all have those days.

But special needs parenting is a whole different ball game - and who is mom enough for that?
We don't get to choose to engage in this 'adventure parenting', it gets landed on us and for the most part there simply is no choice involved. We do what we do because we have to, because it's our child, because opting out is not an option.

So often the received wisdom is also not an option either - on the 'are you mom enough' stakes those choices just aren't there.
I have a friend whose blog updates arrive in my email box regularly - recently she posted about one of her children successfully baking a cake by themselves, often it's full of the fun, newsy things they've been doing, outings, school events etc.
I can't grudge her that. I feel bad even thinking about that.
But the day the cake post came through we'd had another tough one with N. Her child is younger than N and all I could think of was "Bugger being able to bake a cake, I just want a kid who will EAT a slice!"
The school hijinx one came in as we were preparing for a specialist appointment for N and trying to explain yet again how his difficulties in eating and frequent sick days actually meant we couldn't even enrol him in school.

Another friend posts of the horrors of having kid after kid come down with a tummy bug - and I can certainly sympathise - but the very next day N has one of his puky retchy events and apart from hating it when the house rings with the sound of his retching - it also means that the dietitian's current plan is an epic fail - again.
And I just wish, just for a moment, that it were something as simple, as benign, as short lived, as a tummy bug - this one's been going for 4 1/2 years and counting!

And so I find kindred spirits with other 'adventure parenting' parents. When my friend with a kid with Type 1 diabetes posts about just wishing she could go to bed but it's going to be a long night monitoring blood sugars I understand some of that worry and exhaustion. When I find myself doing a complete bedding and pj change for T at 1am because the medicine port on his tube has opened and we have a bed of 'tummy junk' to clean up I find other parents who know what it means when you say you 'fed the bed' that night.
When the house is alive with the sound of retching then there's probably someone else out there who knows what that's like - or even wishes her child could retch!

Normally we just keep on trudging forwards, one foot in front of the other. But I'm usually thankful for the fact that while we might be constantly fighting fires it's only one kid at a time.
But right now we're fighting fires with all the kids.

W is struggling with the increase in workload that secondary requires of him - more to the point he's struggling with the changes in routine that entails! Because of other factors I haven't managed his transition at all well and he's been very distressed at times.
We also continue to battle bureaucrats, many of whom appear to be unable to read as they don't apply the documentary evidence we supplied - or even acknowledge it's existence!

N has significantly deteriorated in the past months and every time we think we might be getting somewhere with him or for him - another door slams in our face. We are not only going round and round the medical bush but it's requiring extensive research to actually try and get some handle on what options there are to help. Right now we're holding our breath to see what another doctor says, a doctor it seems who is probably the only person in the country to be able to help him otherwise we'll have to look overseas.

Through all of this I've said thank goodness T is going well, T is fine. Until last week that is when I got a call telling me his iron levels are an issue again. He ought to be getting way more than enough iron in his feeds never mind his food he's eating - so why is it so low?
In the past it's happened alongside reflux - so bleeding in the oesophagus; his complications from his previous surgeries - so probably something to do with the adhesions, tearing in his stomach round his tube etc.
 But this time there's no obvious reason. I will find out soon if they've dropped since December's tests and if so by how much and thankfully he has a routine paed appointment coming up this week - but we wanted to use that to push things along for N who sees the same paed!

And so, these days I am simply overwhelmed and worried much of the time. For the first time it's spilling over into my dreams, in the few hours of rest I have I'm arguing with doctors, composing letters or consulting with people in my sleep. I wake up just about as tired as I was when I went to bed.

There needs to be safety standards in 'adventure parenting' I think!
Things like the country running out of N's formula yet again and finding out there's a 6 week delay in supply ought to be against the safety standards.
Sometimes, like John Key, I wish I could give this job to someone else.
So, rather than extended breastfeeding being the bar to jump, I do sometimes wonder - am I mom enough for all this? Is anyone?

Achy Breaky Heart

N's eating has become a mission once again.
A major mission.
In late Nov-early Dec he suddenly stopped eating once again.
Some of the issue was caused by trying a non-stimulant ADHD med which had the side-effect of nasty stomach pains - like wake him from a sound sleep crying level pain. But we'd tried the new med, in part, because he'd stopped eating.
Since switching back to his usual med I have managed to get his usual 15-20g of rice bubbles, sugar and milk re instituted as breakfast. But basically that's all he's eating.
Thank heavens for Ensure!

But even getting that into him can be a battle and as a result he lost 1 kg in the past month.
I'd requested a paed dietitian referral at the start of this year - before he lost the weight. Once he'd lost it I emailed the dietitian because I hadn't heard from the hospital or got an appointment yet.
I had her email as she and I have worked extensively together over T and so I asked if we could make T's upcoming appointment for N instead as T was doing well at the moment.
So yesterday was the day.

Thanks to the vagaries of different scales, winter clothes instead of summer ones and a good lot of constipation in the past few days N managed to clock in 800g heavier than he was 2 days earlier. This means instead of being plotted below the 3rd centile where he really is, he's been plotted on the 5th for weight and so the verdict was 'he's growing well thanks to the Ensure'. Actually, weighing the same as he did in July last year ISN'T growing well for an 11 yr old, and his height should be climbing more rapidly too at his age - and it's not.
He gets tired rapidly and weepy and always complaining of being cold - so not really doing well at all.

But the really heart-breaking thing was when the dietitian was talking to him. He'd gone in scared about demands being put on him anyway, either more drink, or to eat.
Her proposal was for N to try tastes only of food. A single mouthful - swallowing is optional!
The only mandatory thing is actually drinking all his Ensure.

As she started talking he put his head down, he brought his feet up, he hunched his shoulders to his ears.
I couldn't see his face (she could) but I could hear his voice shaking as he answered questions - and proposed reasons on why this proposal might not work.
She commented to him that she could see the idea scared him but it's literally only one mouthful and he can have the choice over which part of the family meal it is and if he swallows it or not.
It is also limited to a taste only - even if he wants more - because N has an outstanding track record in sabotaging himself whether he means to or not. He'll get all fired up about dinner, drink his Ensure like crazy to get to dinner - and then wind up so nauseated there's no way he could manage anything - and very reluctant to drink the next day!

But it is so sad, so heart-breaking to see him so scared about something so minor and so normal.
I wanted to scoop him up in a huge hug at that moment and rock him like you do a startled infant.
What an awful journey we've travelled to get to this point! The poor poor kid.
He wants to try, wants to eat but just never ever ever follows through and certainly not reliably.

And so as we very very slowly overcome this fear (and I caught a glimpse through this of just how long a road winds before us) the next challenge will be dealing with the drink volume issue - the need to nag to get it down and later, as we make progress, the need to decrease the drink to help encourage the emergence of an appetite and interest - something N hasn't done for 4 years 4 months and counting - but prior to him actually being able to eat enough. So we are going to have to investigate (again!) alternative delivery methods - and soon because the way things are he is simply unable to attend school.

He needs a year of ordinary school before starting secondary. I've always said that and our experiences with W have simply confirmed that opinion at a professional level - and shown how long the battle to get appropriate services actually is. It has taken us 7 1/2 months to finally achieve what we wanted and needed for W and even though they have said he can do Correspondence I'm yet to have any contact from anyone let alone any work for him!!
It's now well into March and so if we are to have N ready - and/or fight the needed battles - we have to start shortly!

I have said for some time that his issue is a fear issue, just as I have also said that I can work with him and get him through this myself - if only I have the right tools.
So, as we essentially have W sorted for a few months anyway, N is the next cab off the rank in the on-going sagas.
Wish us luck! As I have said to the boys - when it comes down to something I really believe I'm right about and it is in their interests I haven't lost a battle yet. This one, yet again, is too important to lose.

Reflecting on...

Today is 22 February 2012.

To many it is just an ordinary day - especially to those who read this blog from overseas.
But today marks an incredible day in New Zealand's growing up, growing into itself.
22 February 2011 was the day yet another earthquake hit Christchurch, our second largest city - or it was.
But this time, unlike Sept 4 2010 or the Boxing Day quakes of 2010 or the June 2011 quake or Christmas Eve 2011 quakes, this time people died.
185 people died during or as a result of the 22 February 2011 6.3 earthquake.
'Only' a 6.3 in some ways, but the g force involved was apparently unparalleled in previous records.
Buildings crumbled, people's lives ebbed away and others lives crumbled.

Pictures of the buildings and streets look like nothing I expected or thought to see in this country. They look war-torn, and feel like they belong somewhere else.

Over the past 18 months those brave, hardy, incredible people of Christchurch have endured over 10,000 earthquakes. Thankfully today, it seems, Mother Nature has been a tiny bit sensitive and left them alone.

Today I had to explain to my youngest why flags were flying at half mast (sadly it was again as they did for the anniversary of the Pike River mining disaster which NZ also endured in 2010) and the surreal images of people standing stock still in public places, as if in frozen animation, for 2 minutes silence at 12:51pm - the moment when the quake struck.

We all say Kia Kaha Christchurch, we all stand with you, thinking of you, caring about you.

But what does that mean and how can it actually help?
I know I can't imagine the heartache, disruption, distress, tears and at times abject misery of those who have lived through this. The reality of swarms of earthquakes through the night waking the household and distressing children, the patchy power and water, the roads like a ski run with all the things to avoid can only be known to me through the pictures and accounts of those living it.

It has been a hellish year for those living there - and very definitely the country's thoughts, prayers and hopes are with you all. I can only hope that that does mean something, does support in some way.

But what good if any can come from this?
Christchurch will rise, phoenix-like from the ruins, the dust and the pain. But the gaps - in people's lives and also in the nation's history with the loss of so many many heritage buildings and churches - will be huge and far reaching.

I think the country has learnt and is developing on and through this experience.
We are a more mature and supportive country. There may be compassion fatigue - but not when it comes to our own. I know people have grumbled in the past about the costs of sending teams of people to assist other countries in their disasters - but not now. Not after we had hundreds of Australian police sworn in to help Christchurch, teams of fire-fighters from Australia to help in the aftermath and particularly the very rapid response of trained and ready international USAR teams. USAR are Urban Search And Rescue - and that rapid response of both our own around the country and those around the world are responsible for the fact the death toll wasn't higher.

As a country we are learning that, in fact, nowhere can consider themselves safe from seismic disasters and so we had better plan.

In addition to a new, strong, beautiful Christchurch which will rise, there will be a change in the way we build all around the country. This all on it's own will save lives and give some meaning to the horrors Christchurch have lived through.

But on a much smaller, local scale, we can stand with Christchurch by learning their lessons and being prepared. Here in Wellington the reality of a major earthquake is a fact of life, like LA or San Francisco. People are supposed to be prepared. Most of us are complacent - but not any more.
We personally have our basic earthquake supplies anyway.
But it is talking to Cantabrians which lead to a lot more practical thinking on my part.

Now everyone has a torch by their bedside in case of emergency - earthquakes throw a lot of things around and injuries can occur in the dark as you rush to panicked kids.
After post earthquake discussions we now have the key to the back garage door taped to the underside of a shelve in the kitchen. The earthquake supplies are in the garage - and the main door is electric.
People found that electric doors wouldn't open without power. Ours at least has a manual override - so long as you can get in there. People found roller doors got warped and wouldn't open - but we can hand crank it with great effort from inside and so should hopefully be able to get the car out.
In the aftermath of the February earthquake people found petrol stations had power for pumping petrol but no eftpos as the phones were out. So cash was needed to fill the car - which you needed to get more water supplies than you could carry a fair distance. So we have a small store.
Parents I know commented on difficulty in getting medication and specialist formulas for their children after the quake. The roads were difficult and the supplies coming through were those needed urgently for everyone. I know people were pooling resources of things like hypo-allergenic formulas to keep everyone going until supplies could return to some semblence of normal. So I have 5-6 cans of T's Neocate Advance in our supplies. That's several weeks worth for him.
I also have a small supply of N's ADHD medication.
Not only does the idea of a hyped, panicked and unmedicated child fill me with horror, I can't imagine how I'd stop him running through the broken glass, crockery and contents of the pantry!
This supply was very hard to build up as there is no dispensation apparently to get extra supplies of a restricted drug so I only hope I have enough to get him through. Many parents commented that prescriptions were difficult for a good few weeks - doctors' offices might have been closed due to damage, the roads closed or the doctors busy helping the injured. If you don't get to see your usual doctor you can have problems getting a script if they can't access some kind of computer system.
But a photocopy of a script for your regular medications is a good idea.

And so these are ways as well that we can stand with Christchurch, make their suffering not be totally in vain. Learn the lessons so that when, as is inevitable in this beautiful but moving country of ours, it happens again - it isn't so agonisingly catastrophic.
There are aspects of a disaster we cannot alter - but let us be prepared in the ways we can be.
Let us learn from the examples of Christchurch - and may they and those who died last year be always in our thoughts.
We can't change it but we can learn from it.

Kia Kaha Christchurch. Your path in the past 18 months is simply unimaginable but we are with you and bolstering the Cantabrian spirit.

Rest in Peace all the souls who perished - 22 February 2011.